Stories of Wil: You are here

"Acceptance has no starting point. You just jump in wherever you are, firmly plant both feet in the field, and figure it out from there."

submitted by Christie Taylor

Wil is a 14-year-old boy with Down syndrome. He is the little brother, by 20 months, to twin sisters, Katherine and Elizabeth. Wil’s mom, Christie, knew very little about Down syndrome when Wil was diagnosed shortly after his birth. It didn’t take long for Christie to realize how enriching life with Down syndrome is. Embracing this newfound life, Christie was compelled to share her experiences with Wil. Christie’s desire, in sharing these stories, is to promote an awareness, understanding, and appreciation of the amazing capabilities of individuals with Down syndrome.

Like many mothers, I loved my son before he was born. My daughters and husband placed their hands on my belly and felt his kicks and punches. We pondered names and dreamed our dreams. The field of possibilities was laid open before us.

The golden gates to that field slammed shut seconds after Wil was born. My brain valiantly fought to pry them open, objecting to each indicator the medical staff shared with me that my son may have Down syndrome.  Look at the way his arms and legs splay out, they said, see his short stubby fingers and his low-set ears, note the thickness of his neck. Interestingly enough, they never mentioned the shape of his eyes. 

As Wil melted into my chest the day he was born, I reveled in my love for him. I was careful to keep thoughts of his expected diagnosis locked tight in a separate compartment, though it hovered perilously above me. I looked down into his eyes; their shape struck me. I was both awed by their beauty and intensely terrified. My brain, still playing defense attorney, objected strenuously. But when the heart knows, the defense must concede to rest. The compartment above me busted open and everything spilled out all over us on the hospital bed. 

Just days after Wil came home from the hospital, I stared at him in his crib. Though my brain had rested its case — we even had genetic proof by this time — it begged to object. I simply could not believe I had a child with Down syndrome. But it was true. My heart held deep love for him, yet my brain kept its distance. I had never felt so contradicted in my life. As I stood there, my stomach suddenly dropped as if I was going down a roller coaster. The ground vanished below me and I stood suspended, as if in an elevator well. I visually saw darkness under me and the four walls of Wil’s room suffocated me. I knew this experience was a figment of my imagination but my body felt every sensation as if it were real. 

When I was able to regain my balance and logically analyze what happened, I knew what it meant. I felt completely out of control. Though I had many loving people around me and a packet full of helpful information, I realized more than ever that the work of acceptance is intensely personal. I had to take the first grounding step into acceptance myself. 

Acceptance has no clear start point. I never found a big, red “you are here” circle followed by dashed lines leading the way to acceptance. Rather, acceptance is like an open field surrounded by clouded mountains. You just jump in wherever you are, firmly plant both feet in the field, and figure it out from there. 

I overstepped into territory I wasn’t ready for, like reading books about teens with Down syndrome before Wil was even a year old. Those books offer a different meaning to me now for the landscape I’ve travelled, but then it was too much knowledge too soon. I learned how to back-step and move in new directions.

Fourteen year later, I’m still back-stepping and running forward, climbing, traversing, discovering; yet I arrived to acceptance the day I jumped in and firmly planted both feet on the ground. 

I know the feeling of the gates being closed on me. And that is why at the top of every mountain we ascend, like Julie Andrews in “The Sound of Music,” I open my arms wide above the clouds, spin with the wind and soak in the spectacular view of this beautiful, vast landscape I gratefully call home.  

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by Marsha Chartrand

Marsha Johnson Chartrand, a founder, writer, and copy editor with the Manchester Mirror, is a 50-year resident of Manchester. She has a long history of volunteer and community involvement.